Motor neurone disease placing ‘overwhelming financial burden’ on sufferers

People with motor neurone disease (MND) have to shell out almost £10,000 because of costs associated with the disease.

A new cost analysis from the think tank Demos showed that the average patient needs £9,645 every year to pay for their additional needs.

Bills for care, extra assistance around the home, additional money for insurance and household bills all contribute to the cost, according to a new Demos report.

On top of the additional expenditure for regular needs, patients will also each pay out at least £2,175 in one-off costs for things like housing adaptations and adapting or buying a vehicle.

MND is a rare condition which affects around two in every 100,000 people in the UK.

The condition, also known as amyotrophic lateral sclerosis (ALS), progressively damages parts of the nervous system which leads to muscle weakness, stiffening and waste.

Most people with the condition first develop symptoms in their 60s and it affects slightly more men than women.

There are around 5,000 people living with the condition in the UK at any one time.

The Demos report – based on a survey of patients and their families from England, Wales and Northern Ireland – also found that 82% of people living with MND have experienced a negative financial impact following diagnosis.

Surveys of more than 300 MND sufferers and 400 family members bereaved as a result of MND also found that only one in five consider the financial support they received to be adequate.

The report authors made a series of recommendations including a call for health and social care professionals to ensure that people living with MND are signposted to financial advice and support as soon as possible after diagnosis.

“Being diagnosed with a progressive, terminal condition such as MND is one of life’s biggest challenges,” said the report’s author, Simone Vibert of Demos.

“People with MND and their loved ones need to focus on making the most of their time the time they have left with each other, not worrying about their finances. Yet our research shows that many people with the disease are living with an overwhelming financial burden.”

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